THE BLOG

We Must Fight the Stigma of Having a Stoma

21/09/2015 17:14 BST | Updated 21/09/2016 10:12 BST

Each year over 6,500 operations for a stoma are performed in the UK. How would you feel if you were told you needed a colostomy? Scared? Confused? Embarrassed? I remember my exact words when my consultant told me I would need a stoma bag - "I would rather die than have to live with a colostomy."

A stoma is an opening in the side of the abdomen through which bodily waste can pass. There are a variety of causes including injury, childbirth, Crohn's and IBD. At the age of 29, I was told that I had bowel cancer and that I would have to have a permanent colostomy.

I remember waking up after the operation and not wanting to look: I couldn't bear to see what they had given me although it was possible my stoma had saved my life. I felt disgusted, unattractive and alone. I broke down and fell to pieces. The thought of having to clean it, tough it, look at it made me feel sick. How could I be so young and have to go through this?

Despite the fact that one in 525 people in the UK currently live with an ostomy, many patients feel isolated and alone. Some ostomates fear that everyone will be able to tell they have a stoma bag and shy away from activities, certain types of clothing, friends and colleagues out of embarrassment.

At the same time, modern colostomy bags are extremely discreet with it being almost impossible to tell if someone wears a bag unless they tell you directly. It often can feel that you are alone with your problems and issues, when you most likely walk past several people with a stoma during a walk through town.

It took me years to come to terms with my stoma. At my lowest point I weighed only four stone, I had Clostridium Difficile and a blood clot. My marriage had gone past saving and I left my husband.

However, once I finished my chemotherapy and found myself a new job as a community nurse I realised I had to turn my life around for the better because the alternative would be to lie down and give up. I had to start my life all over again, single, with a stoma bag stuck to my stomach. I knew if I couldn't accept it, then who else would?

As my confidence grew I never hid the fact that I had a stoma - talking about it and telling people is what got me through. The reactions I got from men surprised me, as they would tell me I was beautiful and before long I started going out in my lovely old clothes, went back to the gym and began to feel more myself.

Earlier this year, I was contacted by the Colostomy Association who asked me to do something I'd never done before. They were holding a fashion show for their 10th anniversary celebrations and asked if I would like to be one of the models.

In July, along with ten other people with a stoma, I took to the catwalk in front of an audience of over 200 hundred people. The other models included a brave young woman who only wore a bikini and an inspirational 11-year old boy who had no fear or embarrassment about having a stoma.

In the past few years, there has been a huge change in the attitudes and perceptions of people living with a stoma. Brave individuals have challenged the stoma stigma by posting pictures of themselves on social media, blogging about their experiences and shouting about the fact they have a stoma.

On Saturday 3 October, ostomates across the country will be 'Going Purple' for Colostomy Association Awareness Day. The day will hopefully spark a national conversation about how we view people living with a stoma and will put a spotlight on the issues many patients face across the country.

Each year, too many people who are told they need a stoma think they can no longer go on living a normal life. They think having a stoma bag means they can no longer enjoy their social life, the activities they once loved or the clothes they used to wear. We still have a long way to go, but hopefully soon more people will realise that having a stoma is not just life-changing, it is live-saving.

If you have a stoma and would like information, support or advice then call the Colostomy Association's 24 hour helpline on 0800 328 4257 or visit their website at www.colostomyassociation.org.uk